Where have all of our friends gone? Feeling alone in hospice caregiving
By Patty Ayers
When I was in my second year of graduate school,* I was fortunate enough to have my field placement at Gilda’s Club South Jersey. For those of you who are not familiar with Gilda’s Club, it’s a cancer support community that was started by actor Gene Wilder and others when his wife, actress Gilda Radner, died from ovarian cancer in 1989. (Here’s the website for more information and to find a Gilda’s club near you.) During my internship I trained with some of the best group facilitators and was fortunate enough to get the opportunity to co-facilitate support groups for cancer patients and their families. One discussion that really stands out throughout all of the groups over the course of the two years is the topic of support or lack of support from friends/family. I can still remember my surprise and disbelief the first time I heard patients and family members tell how isolated and abandoned they felt when friends and or family members disappeared after learning about their or their spouse’s diagnosis.
Maybe my strong feelings were a result of transference (feelings transferred to me by patients), but either way the feelings were nonetheless still present and hurtful. I can remember thinking “How can people abandon those they call ‘friends’ or ‘family’ at such a fragile time in their lives?” What affect does this have on the caregiver who has to watch her loved one deal with his or her feelings of isolation or self-blame?
After many years of facilitating support groups and a few years of direct practice, I’ve come to realize that this issue is not one-sided and it’s a little more emotionally complex than I first thought. Not only does it extend to other illnesses like Alzheimer’s Disease, Congestive Heart Failure or ALS, it touches the lives of those with mental illnesses as well (who I would think are at greater risk of isolation due to the stigma imposed on most mental illnesses).
So what exactly are the reasons that people might avoid those diagnosed with an illness? One reason is probably their anxiety about illness and their fears about becoming sick themselves. Unfortunately, there are still people who are misinformed about cancer and other diseases and think they can be transmitted through human contact. Sometimes when people see others who are terminally ill, it reminds them of their own mortality which for some is way too unpleasant to think about. Others avoid friends or family members because they simply do not know what to say or they are afraid of saying the wrong thing.
Regardless of the reasons why people avoid or have less contact with those who have an illness, the feelings still remain and we as caregivers are left to support our loved ones as well as sort out our own feelings toward the matter. Many patients say that friends and family are there for them and act very supportive at first when the diagnosis is new and they are essentially still in shock. They send cards and flowers and call often, but a few weeks later, when the dust settles, there are those who are not heard from again.
How can we as caregivers provide support to our loved one when they are hurting?
• I think one of the best ways is to ask them to try not to take it personally because it’s nothing they have done; unfortunately it’s just the nature of some people to fear seriously ill people as they fear dying and are reminded of their own mortality. It may be easy for our loved ones to turn inward and to question their own past actions.
• Encourage your loved one to communicate their feelings to the people who hurt them instead of holding them in or wondering what happened that made them go away.
• Also, if they are physically able, encourage the person you care for to join a support group where they can be with others with the same diagnosis who can better understand and relate to their feelings.
• Don’t be afraid to let family and friends know specifically what they can do to help from the very start. Perhaps they “disappear” because they are not sure of what they can do without feeling like they are being “too helpful” or intrusive. For example you can say something like “we could use dinner on Tuesday night” or “I have to work Monday, can you take Mom to the doctor?”
• As a caregiver, you might also benefit from a support group for hospice caregivers.
Maybe this illness has taken away a lot of the control you had prior to learning of its existence, but you do have control over how and when others can help. If people make promises to help and don’t follow through, don’t be afraid to call them and let them know how crucial it is for you to have reliable help. I think it’s also important to remember that people do want to help and although they may have some fears when it comes to seeing you and your loved one’s struggles, we are all only human. Once you explain to them what is happening and what you expect to happen, maybe their goodness will overcome their fears.
* Patty Ayers is a licensed social worker and holds a Master of Social Work degree.